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Everything posted by EAMom

  1. Hi Eliself, Do you know what dose you were giving? Did the flare happen immediately after the dose? Was this for you or your child?
  2. Hi, I'm interested in learning more about Low Dose Naltrexone. Please comment if you have any information or experiences! Thank you!
  3. here's the link http://www.mdedge.com/clinicalpsychiatrynews/article/131114/pediatrics/antibiotics-have-role-pans-even-no-infection
  4. Hey, I'm putting this article here b/c when I've searched for it recently it's been behind a paywall...but today it's not. So now it's here for safe keeping in case it becomes inaccessible again. Antibiotics have a role in PANS even with no infection Publish date: February 9, 2017 By: M. Alexander Otto Clinical Psychiatry News EXPERT ANALYSIS FROM THE PSYCHOPHARMACOLOGY UPDATE INSTITUTE SAN FRANCISCO – Antibiotics might help in pediatric acute-onset neuropsychiatric syndrome (PANS) even if there’s no apparent infection, according to Kiki Chang, MD, director of PANS research at Stanford (Calif.) University. first step at Stanford is to look for an active infection, and knock it out with antibiotics. Dr. Chang has seen remarkable turnarounds in some of those cases, but even if there’s no infection, “we still do use antibiotics.” There are positive data, “although not a lot,” indicating that they can help. Some kids even seem to need to be on long-term antibiotics, and flair if taken off long after infections should have been cleared. Dr. Kiki Chang “We don’t know what’s going on. We try to stop antibiotics if we can; if patients relapse, we think the benefit [of ongoing treatment] outweighs the risks. Some kids just have to be on antibiotics for a long time, and that’s an issue.” Perhaps it has something to do with the anti-inflammatory properties of antibiotics like azithromycin and amoxicillin, or there might be a lingering infection, he said at a psychopharmacology update held by the American Academy of Child and Adolescent Psychiatry. PANS is a recently coined term for the sudden onset of obsessive compulsive disorder (OCD) within a few days of an infection, metabolic disturbance, or other inflammatory insult. Anxiety, mood problems, and tics are common. There might be severe food restriction – only eating white foods, for instance – that are not related to body image. PANS broadened the concept of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS), which was first described in 1998, although it’s been known for generations that acute streptococcus infections can lead to abrupt psychiatric symptoms. PANS is the topic of ongoing investigation, and Dr. Chang and many others are working to define the syndrome and its treatment, and trying especially to determine how PANS differs from typical OCD and other problems with more insidious onset. The idea is that inflammation in the patient’s brain, whatever the source, triggers an OCD mechanism in susceptible patients. As a concept, “we believe it’s true,” he said. For now, it’s best to refer suspected cases to one of several academic PANS programs in the United States, as diagnosis and treatment isn’t ready for general practice, he said. If more than antibiotics are needed, Stanford considers targeting inflammation. Some children respond to easy options such as ibuprofen. Dr. Chang has seen some helped with prednisone, but treatment is tricky. There might be an occult infection, and PANS can present with psychiatric issues that prednisone can make worse, including depression and mania. Intravenous immunoglobulin is another of the many options, “but we really need about four treatments” to see if it helps. Cognitive behavioral therapy and family support also helps. As for psychotropic medication, “we often use them, but they rarely take away the acute symptoms,” and PANS children seem especially sensitive to side effects. “I’ve seen many of them become manic on SSRIs. I’ve seen some of them have very strong [extrapyramidal symptoms] with atypical antipsychotics. You have to be very careful; we don’t have any good studies” of psychiatric drugs in this population, he said. At the moment, PANS seems to be more common in boys than girls, and most patients have a relapsing/remitting course and a family history of autoimmune disease. Suicidal and homicidal ideation can be part of the condition. Dr. Chang believes PANS could be part of the overall increase in autoimmune disease and psychiatric disorders in children over the past few decades. “We have more kids who have special needs than ever before,” large, objective increases in bipolar, autism, and other psychiatric problems, as well as increases in psoriasis, nut allergies, and other autoimmune issues. “What causes it is harder to say, but there has been a change for sure in kids and their immune system development that does affect the brain, and has probably led to more neuropsychiatric disturbances,” he said. “No one talks about it. Everyone thinks that it’s some sort of pharmaceutical industry conspiracy” to sell more drugs by increasing scrutiny of children. “I think it’s caused by something in the environment interacting with genetics,” whether it’s infections, toxins, or something else. “We don’t know. Any kind of inflammation can be a trigger” and “we know inflammation” is key to “many psychiatric symptoms. I do think there’s something going on with kids over the last 30 years,” he said. Dr. Chang is a consultant for and/or has received research support from Bristol-Myers Squibb, Lilly, Merck, GlaxoSmithKline, and other companies. aotto@frontlinemedcom.com
  5. Moleculera just posted this on their FB page: Excerpts from an interview with pediatrician and immunologist Dr. Seshagiri Rao, of Texas: "I think parents are very smart. Sometimes I see parents whose child has just developed symptoms, maybe a month ago, two months ago. These days with social networking, parents are very well connected and most of the time it is not the pediatricians but other parents who guide them." "Its very important for pediatricians and primary care physicians to trust the parents. If the doctor says 'I dont believe in PANDAS', the parents are left living a very difficult . That's what some of them call it. If the physician cannot give treatment, they can at least support the parents and try to find someone familiar with the disorder. That does not happen and it's a shame." "When I started, I used to see maybe 8 or 10 cases of PANDAS each year. Now I see around 8 new cases every week. Ive got patients from Georgia, North Carolina, Alabama, Tennessee, Arkansas and Oklahoma, mainly because they cannot find anyone who will acknowledge the condition and treat it."
  6. I've heard Murphy is mainly good for diagnosis, not so stellar for treatment. You have 2 leading PANDAS physicians in Texas. I would not recommend travelling to the East Coast in your case. Here's a provider list (by state) from Pandas Network http://www.pandasnetwork.org/research-resources/us-providers/ Dr. Sesgagiri Rao (Leading PANDAS Physician) Immunologist 972-964-7374 Plano, TX will treat more complicated cases involving PANDAS and Autism Dr. Bruce Russell (Leading PANDAS Physician) Pediatrician 361-749-1930 Port Aransas, TX May not be accepting new patients. Will treat more complicated cases involving PANDAS and Autism
  7. I love this part...you know he's GOT to be thinking VACCINES (at least that was my first thought) but he just can't say it! “We have more kids who have special needs than ever before,” large, objective increases in bipolar, autism, and other psychiatric problems, as well as increases in psoriasis, nut allergies, and other autoimmune issues. “What causes it is harder to say, but there has been a change for sure in kids and their immune system development that does affect the brain, and has probably led to more neuropsychiatric disturbances,” he said. “No one talks about it. Everyone thinks that it’s some sort of pharmaceutical industry conspiracy” to sell more drugs by increasing scrutiny of children. “I think it’s caused by something in the environment interacting with genetics,” whether it’s infections, toxins, or something else. “We don’t know. Any kind of inflammation can be a trigger” and “we know inflammation” is key to “many psychiatric symptoms. I do think there’s something going on with kids over the last 30 years,” he said.
  8. Was it a tetanus only shot (don't think that's available in the US) or the Tdap? Many PANDAS parents (at least the ones I've encountered in FB groups) have stopped vaccinating b/c the risk of vaccination (in a child with PANDAS/autoimmune dz) outweighs potential benefits. There is a teen in one of the FB groups (who was previously stable PANDAS) who has been having ongoing (months) severe issues (meaning hospitalizations, seizure like activity) after tdap and meningitis vaccines. Also, don't forget that you can draw titers to prove immunity (that's what we did for tetanus) if there were prior vaccines. That said, it's hard to say that even if the titers were low, that vaccination would be a good idea for our kids. I'm glad he's doing better now. It's hard when there are ongoing insults to the immune system (vaccines, then illness, also allergies this time of year).
  9. It sounds like you have PANDAS with onset in childhood. Here's a thread on adult PANDAS (there are others): http://latitudes.org/forums/index.php?showtopic=16422&page=2
  10. Cytokines and inflammation are discussed! "There are several ways in which a severe reaction to airborne allergens might tip the scales for someone at risk for suicide, but here’s one. When a speck of pollen from the air comes into contact with immune cells in the nose, the cells release cytokines—molecules that cells use to communicate messages to one another. Postolache and others believe cytokines might drift through the nose to enter the brain. There, the cytokines might disrupt the brain’s delicate chemical soup, shifting the balance from feel-good chemicals to toxic ones that may trigger anxiety and impulsive behavior. Besides the nose, cytokines might also influence the brain by traveling through nerves, or by prompting immune cells to mistakenly attack healthy brain cells. These cytokines, then, may play a role in the angst and impulsiveness that drives people to take their lives. Indeed, Postolache and others found elevated cytokine levels in the brains of suicide victims." https://www.theatlantic.com/health/archive/2017/04/the-troubling-link-between-allergies-and-suicide/523608/?utm_source=fark&utm_medium=website&utm_content=link&ICID=ref_fark
  11. This blog is wonderful! Great PANDAS/PANS article to read and share. https://walkinginquicksand.com/2017/04/19/what-you-should-know-if-youve-ever-wondered-if-your-child-had-pandas-or-pans-even-if-your-doctor-ruled-it-out/
  12. Along the same line of whether vaccines may have set the stage for autoimmunity... Listen to this podcast (#4 interview with Wakefield). The whole podcast is excellent but this part pertains to infection triggered autoimmune dz (e.g. Pandas): At 6 1/2 minutes into it (until 8 1/2 minutes) he talks about ground squirrels in Russia . In some areas, they would all die if exposed to the plague bacteria. In other areas, it was a benign infection. After 16 years of research they figured out the difference was that the squirrels that ate plants growing in areas with high heavy metal content were the ones that died...it was the INTERACTION between 2 environmental agents that affected the outcome of the infection. 👉🏼Wakefield goes on to talk about lab animals that are resistant to autoimmune dz, and giving them an infection (leishmaniasis). Then you give them mecuric acid (Mercury)and they get autoimmune dz. So, that what happened to my kid strep + heavy metals = pandas. Of course there are lots of unanswered questions (like what percent of kids would have PANDAS even if they weren't vaccinated) and the role of genetics. I don't think it's binary (Wakefield uses that word! 😆). I'm sure there are other players (diet, genetics, other toxins, co-infections, number of strep infections and if they are treated) in this puzzle. https://itunes.apple.com/us/podcast/how-to-end-the-autism-epidemic/id1171633435?mt=2&i=377807694
  13. New Study: "This pilot epidemiologic analysis implies that the onset of some neuropsychiatric disorders may be temporally related to prior vaccinations in a subset of individuals." "This study examines whether antecedent vaccinations are associated with increased incidence of obsessivecompulsive disorder (OCD), anorexia nervosa (AN), anxiety disorder, chronic tic disorder, attention deficit hyperactivity disorder, major depressive disorder, and bipolar disorder in a national sample of privately insured children." #RFKcommission http://journal.frontiersin.org/article/10.3389/fpsyt.2017.00003/full
  14. This is another good article on the Lewis Group study https://medium.com/@jbhandley/diabolically-dishonest-lewin-groups-mmr-autism-sibling-study-f83af102bb38#.ng0ypb71u
  15. Here's an article from 2015 about using glutathione vs NAC for skin picking. https://med.stanford.edu/news/all-news/2015/07/antioxidants-help-treat-skin-picking-disorder-in-mice.html Antioxidants help treat skin-picking disorder in mice, researcher says Two antioxidant supplements were found to be effective in treating a skin-picking disorder in mice, suggesting they may be useful in people with the condition. JUL 132015 Joseph Garner and his colleagues found that two antioxidant supplements were effective in helping mice with a skin-picking disorder. Steve Fisch Two antioxidant supplements are effective in treating skin-picking disorder in mice, according to a study led by a Stanford University School of Medicine researcher. The finding suggests that people with the potentially serious disorder might benefit from this therapy. An estimated 4 percent of the population — or about 1 in 25 — suffer from skin-picking disorder, in which repeated, compulsive picking or scratching of the skin can lead to severe disfigurement and life-threatening infection. Skin picking is also common among laboratory mice, which may develop potentially fatal ulcerative dermatitis, skin lesions, caused by excessive grooming. The condition is the single leading avoidable cause of death among laboratory mice, said Joseph Garner, PhD, associate professor of comparative medicine and senior author of the study, which was published online today in PLOS ONE. The lead author is Nneka George, DVM, of the University of North Carolina at Chapel Hill. In the study, the researchers experimented with two antioxidant supplements — N-acetylcysteine and glutathione — to treat mice with skin-picking disorder. NAC is used by cells to make glutathione, which is the brain’s main, naturally occurring antioxidant. NAC has been used experimentally in people with a variety of conditions, including Parkinson’s disease, autism and cystic fibrosis, and reports of individual cases suggest it could be useful in treating skin picking. Potentially fewer side effects from glutathione“With NAC, almost every mouse got a little bit better,” Garner said. “But there is a huge variability is response, anywhere from a slight improvement to complete cure.” NAC also took a long time to show an effect: If an animal was cured, it took six to eight weeks. With glutathione, the pattern was very different. Fifty percent responded, but in these animals it was a rapid, all-or-nothing response: If they got better, they were completely cured in two to three weeks. The animals that didn’t get better were worse off to start with, the researchers found. Garner said the results suggest that glutathione might be an even more powerful therapeutic, with potentially fewer side effects. “What’s exciting is that we have a compound that works. It works as well as NAC. It’s clearly working differently, or at least more directly. This different response profile gives us some hope that there may be some nonresponders, or people who can’t tolerate NAC, who may be helped by glutathione,” he said. This can lead to really serious disfigurement in extreme cases. Skin-picking disorder is a surprisingly common condition, yet many patients avoid seeking help because of the shame and embarrassment, Garner said. “This can lead to really serious disfigurement in extreme cases,” he said. “People suffer in complete silence. They think they are the only one who has it, despite the fact that it’s very common, and it kills people.” By the time people do seek help, about 35 percent have required some kind of antibiotic treatment, and 5 percent have required intravenous antibiotics to treat potentially life-threatening infections, he said. Some are referred for psychiatric help. Although cognitive behavioral therapy can be an effective form of treatment, there are few practitioners equipped to do this form of therapy, Garner said. People with the condition also may be prone to compulsive hair pulling, another body-focused, repetitive-behavior disorder. A clinical trial among patients with the hair-pulling disorder, also known as trichotillomania, showed NAC to be an effective treatment in 56 percent of cases. Study methodsIn the latest study, the researchers selected 16 mice with lesions on the face, neck and limbs — signs of skin picking. Because the condition is painful and potentially fatal, the researchers treated all the mice with a thin film of topical antibiotic and steroidal ointment to relieve their discomfort. A third of the mice received a high dose of NAC in their drinking water. Another third were given drops of glutathione on the nose. (Because mice are nose breathers, they easily inhaled the compound.) A control group was given neither of the compounds. Almost all the animals treated with NAC showed some improvement, though the improvement was slow. By the end of the study, 40 percent were fully cured. Among the animals treated with glutathione, results were more rapid: Within two to four weeks, about half were cured; the other half did not respond. There was no change among the control animals. People suffer in complete silence. They think they are the only one who has it, despite the fact that it’s very common, and it kills people. Garner believes that NAC works by combating oxidative stress that causes certain cells in the brain to die or become inactive. “Our thought is maybe NAC works because in the brain it is the precursor to glutathione, and the brain has to make glutathione to protect itself against oxidative stress,” he said. NAC, however, isn’t easily tolerated by many people, causing gastrointestinal distress, he said. Intra-nasal glutathione, on the other hand, may avoid these potential side effects by bypassing the gut and liver, delivering the compound directly to the brain. He first presented the results in April to a patient advocacy group. “The sense of excitement from patients, advocates and researchers was palpable,” he said. “This is the first new potential drug for this disorder in years.” Garner said his next step is to plan a clinical trial in patients to test the value of intra-nasal glutathione. Another Stanford co-author of the study is research associate Jerome Geronimo. The experiments were conducted by researchers at the University of North Carolina Chapel Hill. The study was funded by the Timothy Foundation, a private nonprofit supporting research in body-focused repetitive behaviors, and by the Division of Laboratory Animal Medicine at UNC-Chapel Hill. Information about Stanford’s Department of Comparative Medicine, which also supported the work, is available at http://med.stanford.edu/compmed/. ByRUTHANN RICHTERRuthann Richter is the director of media relations for the medical school's Office of Communication & Public Affairs. Email her at richter1@stanford.edu.
  16. Northern CA Parents, please come to the screening of My Kid Is Not Crazy on February 23 in Menlo Park: "PANDAS NETWORK IS PROUD TO PRESENT A SPECIAL FRIENDS & FAMILY SCREENING OF: MY KID IS NOT CRAZY, A SEARCH FOR HOPE IN THE FACE OF MISDIAGNOSIS. Come to the screening where filmmaker, Tim Sorel, will be present to discuss the making of the film. My Kid Is Not Crazy, tracks the journey of six children and their families as they become tangled in the nightmare of a medical system heavily influenced by the pharmaceutical industry. Here it is common for a healthcare provider to prescribe a young child with a Selective Serotonin Uptake Inhibitor (SSRI) but hesitates to prescribe an antibiotic to counteract a potential infectious-based trigger. For some of these kids, what happens after several years is shocking and sad." Here's a link to info on Facebook https://www.facebook.com/events/1288292294567785/ Link to buy tickets https://www.eventbrite.com/e/my-kid-is-not-crazy-a-search-for-hope-film-screening-tickets-30312376133
  17. Isjoca, Contact http://www.midwestpandas.com/ ​The e-mail is midwestpppa@gmail.com , they may be able to help you find a doc that suits your needs. Also, they may be able to help you find a doc here http://www.pas.care/
  18. PS you might make a whole separate post so others can see it better
  19. Isjoca what state do you live in?
  20. 1) VAXXED: Caller Gets Schooled on Dr. Andrew Wakefieldhttps://www.youtube.com/watch?v=TTxQxkXevkQ (more info here http://vaxxedthemovie.com/dr-andrew-wakefield-deals-with-allegations/ ) 2) Santa Barbara Q and A with Del Bigtree (producer of Vaxxed) https://www.facebook.com/del.bigtree/videos/10153458187935964/
  21. I agree with Rowing Mom. Try to do as much organic as possible. Just going non-GMO is a start but not enough.
  22. You have to go with what works...although I agree with Sirena about trying a 3rd option. Most PANDAS parents don't find Amoxicillin to be as clinically effective as Azith, Augmentin, or the cephalosporins (like Cefdinir).
  23. Yes, we've had fever and headaches post IVIG. We've used Tylenol, Advil, Benadryl.
  24. Did they do a throat swab to check for strep? My dd never had elevated titers but both she and her sister were positive on the throat swab. Also, my PANDAS dd ended having vaginal strep. Neither had typical sore throat symptoms. From your description, it sounds like your dd would qualify for a PANS diagnosis (PANDAS could be considered if there was evidence of strep). My dd had a flu shot 2 mo. before her big PANDAS exacerbation started (when she got strep). I also wonder if the vaccine played a role in tweeking her immune system toward autoimmunity. BTW, there's a whole book out on vaccines and autoimmunity now. It's expensive but you can go to Amazon and "look inside" to get an idea.... http://www.amazon.com/Vaccines-Autoimmunity-Yehuda-Shoenfeld/dp/1118663438
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